Journey With Parkinson’s: Mind the Gap

“Mind the gap – it’s the distance between life as you dream it and life as it is.” Cate Blanchett

“The biggest gap in your life is between what you know and what you do.” Bob Proctor

Introduction: Several concerned readers have contacted me recently about not posting on “Journey with Parkinson’s,” asking about my health, etc. They were just worried about my Parkinson’s and keeping the blog going.

Like all of us with Parkinson’s, our progression moves in miniature steps, eventually culminating in physical and emotional changes. I am convinced I am doing okay. Cognitively, I am functioning just fine. I am still playing two rounds of golf each week and going to the driving range to hit golf balls about three times per week. I am starting to learn how to ride the newly acquired Peloton bike in the extra bedroom. I am trying to incorporate more online PWR! Moves exercise classes into my week. And I plan to visit the gym soon to begin RockSteady Boxing classes. However, I am still dealing with not sleeping enough, but when my brain wakes up, so does the rest of me.

I was rushing to get to a Physical Therapy appointment recently, and I took my first dose of carbidopa/levodopa. However, I forgot to apply the Neupro patch to my arm. I thought by late afternoon, “I am so stiff and clumsy and moving slowly and uneasy. Could this be a sudden leap forward to motor dysfunction?” After a few deep thoughts, leading to calmness, I realized I had not yet applied the Neupro patch. It did me no good with the patch sitting on my office desk. I placed the patch on and felt better in an hour or so. The moral of the story is that the timing of taking my prescribed drugs for treating Parkinson’s is crucial to my routine functioning, and the overall amount is well-balanced concerning my daily need for dopamine replacement. Furthermore, I have been on the same treatment plan for several years, which is a good sign.

The current blog post aims to fill one in on the lack of posting blogs over the last several months. Thus, an update of sorts.

“The interaction of genetic and external influences makes my behaviour unpredictable, but not undetermined. In the gap between those words lies freedom.” Matt Ridley

Stopped Taking the COMT Inhibitor: I wrote about taking the COMT inhibitor entacapone a few months ago. COMT inhibitors work by preserving the lifetime of levodopa. I wrote about how great it felt not to have “on and off” periods. And I had also reduced my usage of carbidopa/levodopa by ~15%. Strangely, I developed severe watery diarrhea about 12 weeks into my treatment with entacapone. After unsuccessfully contacting my new Neurologist, I stopped taking the COMT inhibitor. Normal GI function returned the next day. Reading the old literature shows that entacapone’s only significant adverse side effect was diarrhea, which typically develops within 8-12 weeks of regular use. So, I finally had an adverse reaction to something so beneficial for Parkinson’s. I am scheduled to see my new Neurologist later this month. Hopefully, my Neurologist can answer my questions.

“Your problem is to bridge the gap which exists between where you are now and the goal you intend to reach.” Earl Nightingale

Being Retired Takes Effort: Recently, I published two blog posts entitled “Parkinson’s Disease Convinced Me It Was Time to Retire” (click here to read this post) and “Retired Life in the Presence of Parkinson’s Disease” (click here to read this post). No doubt it took a lot of effort for me to retire. The three years of phased retirement provided the time to get ready to retire. But the reality of being retired was different. I do know this about being retired. My Parkinson’s was the primary reason for initiating phased retirement, progressing to fully retired. Definitely, being retired has assisted my battle against Parkinson’s. However, too many hours of sitting around and doing nothing now favors Parkinson’s effort to control me.

Since retiring last July 1, 2022, until recently, I realized I have never fully retired. I can offer several reasons. First, I enjoyed working, and working hard fueled the fire of my academic career. I still seem to be working, at least part-time. Next, I have inadvertently embraced working and preparing/writing a blog post similar to writing a scientific paper. I left North Carolina and moved to South Carolina 481 days ago, and since that time, I have written/published 71 blogs, which works out to posting a blog every 6.8 days.

Interestingly, since beginning this blog in March 2015, my writing and posting have been 11.5 days between blog posts. For many people with blogs, either of these rates may be the same, trivial. But for me, the effort to write (research, learn, and translate) takes time and, in some cases, a lot of time. So, to break this feeling up a little, I stepped back from writing the blog for a few weeks.

“The gap between the committed and the indifferent is a Sahara whose faint trails, followed by the mind’s eye only, fade out in sand.” Nadine Gordimer

Traveling: Being retired officially, regardless of how accepting of the term I have been the first year, has involved some traveling. The past few months have seen us travel to:

1. Bermuda
2. Boston, Massachusetts
3. Chapel Hill, North Carolina
4. Jacksonville Beach, Florida
5. Pawleys Island, South Carolina
6. Fairhope, Alabama
7. Pensacola Beach, Florida

Except for Bermuda and Boston, these trips were done driving. And while I no longer drive long distances, there is a tiring challenge to long trips in a car with Parkinson’s. The new traveling environment always stresses me out at first, which exacerbates my Parkinson’s and consumes more dopamine than necessary, but then I adapt, and all is well. However, I am always happy to return home and get back to the normalcy of life.

“If you no longer go for a gap that exists, you are no longer a racing driver.” Ayrton Sennad “The succession of thoughts appears in time, but the gap between two of them is outside time. The gap itself is normally unobserved. The chance of enlightenment is missed.” Paul Brunton

Book Writing and Computer-derived Mindfulness Project: To help jumpstart my Non-Profit Organization, “Frank C. Church Foundation for Parkinson’s Disease” (click here for more information), I am working on several ideas related to education and mindfulness. Tentative titles for two books in progress include “Overviews of Parkinson’s Disease” and “Frank Words on Living with Parkinson’s Disease: A Daily Journal.” The other idea is to develop commercially a mindfulness project for people with Parkinson’s (but I will need advice and guidance from the Board of Directors before saying/doing anything further).

“Skill is how you close the gap between what you can see in your mind’s eye and what you can produce; the more skill you have, the more sophisticated and accomplished your ideas can be. With absolute skill comes absolute confidence.” Twyla Tharp

Future Blog Posts: I have not abandoned the “Journey with Parkinson’s” blog. I have just taken a brief pause to regroup. I am learning much about Parkinson’s, but I still need to decipher and better understand Parkinson’s. Still, here is a short list of some blog posts in the future:
•Vsion and Parkinson’s;
•Pathways of pain modulated by dopamine;
•A candidate market of Parkinson’s in a blood-based test;
•Role of neuronal hemoglobin to down-regulate dopaminergic neurons;
•Muscle strength and power in people with Parkinson’s;
•Circadian-based fasting and exercise therapy for treating Parkinson’s;
•Autonomic dysfunction in Parkinson’s;
•Exercise metabolism and response to exercise vary according to the time of day;
•Baroreflex dysfunction and orthostatic hypotension in Parkinson’s;
•Neuroprotective effects of Ginkgo biloba;
•Potential role of luteolin in treating Parkinson’s;
•Potential role of sulforaphane in treating Parkinson’s;
•Exploring the latest hypotheses for the origin of Parkinson’s;
•Several other personal reflection pieces about adapting to life with Parkinson’s.

As usual, if there is a topic you want me to write about, please contact me (frank.church@gmail.com) because I am always happy to explore new ideas.

I am excited to continue writing blog posts on the “Journey with Parkinson’s” blog. My primary future goal is to not be consumed by blog writing but to be energized by it. I will strive to protect and cherish this time of exploration, learning, and writing about Parkinson’s but balance it better with my retired life.

“To discover your real questions, simply take a time-out. Stop looking ahead of yourself at where you’re going or backward at where you’ve been. When you do stop, there’s a sense of going nowhere. There’s a sense of gap, which is a tremendous relief. You can simply breathe and be who you are.” Dzogchen Ponlop Rinpoche

Cover photo image by Greg Plominski from Pixabay